Hello everyone I hope everyone is well? I don't post very often but am a bit concerned as my husband who was diagnosed in 2006 with cml keeps having nosebleeds, he has had a nosebleed everyday for the past 4 days. Is this normal or does it mean his cml is getting worse? I'd appreciate any input. Thankyou.
Belinda .
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Nose bleeds
Hello Belinda,
while i can't offer any specific advice about the nose bleeds themselves, I do have sinus and ENT problems brought about (I think) by my TKI. What I can say is that the PCR results are key; assuming your husband is on a 3-monthly testing regime, then remind yourself of the last PCR result and how this looks against the trend. Assuming it is low i.e. less than 1% and you consider CML is a slow moving disease, then in the balance of probabilities it is unlikely the CML is causing the nose bleed themselves. Although i don't have a clinical reference, my understanding is clinical signs/symptoms start presenting at a PCR above 10%-15%. It is unlikely the CML could have progressed to such an extent in a short space of time.
That leaves two possible explanations:
1. Side effect of his TKI which is either getting worse or just 'having a cyclic effect' which will calm down.
2. Something unrelated to the TKI (or CML for that matter)
In your shoes I would contact the centre where your husband is treated for CML and ask their advice; they will either ask him to come in or advise a GP visit. It may be that an alternative TKI will be the way forward if the current TKI is determined to be causing the nosebleeds.
Let us know what happens.
Chris